About me

From the AVM SURVIVORS web site: "Arteriovenous malformations (AVMs) are defects of the circulatory system that are generally believed to arise during embryonic or fetal development or soon after birth. Although AVMs can develop in many different sites, those located in the brain or spinal cord can have especially widespread effects on the body".
I am currently undergoing embolizations with Dr. Wayne Yakes @ the Swedish Medical Center in Englewood, CO every 8 weeks! Our lives are either planning a procedure, having a procedure or recovering from a procedure! The trick lately seems to be to keep the "bleeds" under control! My husband Mark is also my caregiver! He has become an expert wound care therapist, not to mention all around bundle of being just exactly what I need to get through the day and this ordeal we call an AVM! I recently finished 10 years of Embolizations w/Dr. Yakes and am finally ready for my next stage - Debulking and reconstructive surgery w/Dr. Robinson in CO - he is a dentist and plastic surgeon! Best advice to an avm patient - Stay positive and surround yourself with supportive people! Lots of faith, prayer and love are all crucial too!

Wednesday, October 26, 2011

Hi Everyone! Trick or Treat! I just had to post a photo of Hanz and Bella in their Halloween costumes! One of my co-workers generously gave me these costumes that formerly belonged to her daughter Jackie's dog, Sammy! We thought Hanz would be a cute Lobster and Bella fittingly a "Lil' Devil"! Gosh she's terrible! Always into something she shouldn't be or barking @ anyone that walks by the window! Mark calls her Yapitty Yap!

I was under the impression from the Petsmart ad, that a girl dressed like a witch would be in the photo with them, but no - to boot, an hour into the event when we arrived, Petsmart ran out of frames, so I ended up making my own! Had gone to Hobby Lobby and JoAnns and didn't find any Halloween photo frames, so got a plain black one @ Michaels and stuck a bunch of adhesive Halloween decorations on their - very cute! One petowner had their little chihuahua dressed like a taco, and another had her bulldog dressed as a princess and there was a french bulldog dressed as a bumblebee!

Well, after those 2 bleeds I recently had, I was a bit shook up for a couple of days. I go through phases where it feels like the world is closing in on me. Then other days where I see the big picture and realize how very blessed I am to have such love and support from everyone! I really DO NOT like when people stare all the time. I rarely go out for lunch, since it's easier to just bring my own, take my time eating and have my "quiet time" that I love - reading during my lunch hour! Well today I decided to go out for a McRib, and sure enough, someone had to ask about my face! UGH! The lady was very nice - approached me and said, "God Bless you"! She asked what I had, whether it was cancer and if she could pray for me. Of course I said Yes! Before I left, she called me over to her table and gave me a couple of miraculous medals and a prayer card. Told her thank you and how much a big part Faith plays in this entire avm thing! Kind of bummed me out for the rest of the day though. Most times I forget what I look like, until times like I was @ Penney's yesterday and saw myself in the mirror. My kerchief was all askew, so you could see I have a trache, and of course right now the left side of my face has a huge black scab from the last procedure, not to mention the hole made from a past embolization! I've been trying to "soften" that scab to get rid of it and do some wound care - so much fun! NOT! Plus, while I was last in CO, a culture was done on that open wound and of course there is a pseudomonous (sp?) infection that I'm taking antibiotics for! The steroids help w/my swelling, but lower my immune system and make healing slower! Not to mention increase my appetite, so I'm a moose! The steroids make me crave carbs like crazy and I go through phases where I have these "addictions" and can't get enough of a certain type of food! For a while I was addicted to candy corn, then it was coconut cake! Now, it's those protein drinks like Ensure, and dairy products! Can't get enough cottage cheese and yogurt and you know what that means don't you? Yeah, phlegm! UGH! That does not help, hacking and trying to get that out when I can't open my mouth very wide and the fear that the strong hacking will end up causing a spontaneous bleed! I have to just hope that doesn't happen - this avm has a mind of it's own and will blow whenever it wants regardless of what I eat or do!

Speaking of being a moose, that reminds me, I'm glad Chaz Bono got voted off Dancing with the Stars - finally! I'm figuring the top two will be JR Martinez and Ricki Lake, right?

I'm currently preparing for BREAKING DAWN PART I in the TWILIGHT series, by reading all the books for the 12th time! Yup! I love to read and when I read those books, I become Bella Swan with Edward Cullen as my cutie boyfriend! :) FX Channel was just showing Twilight this evening! I started watching AS GOOD AS IT GETS on Sat. night to see our inspiration for getting a Brussels Griffon - the little dog in the movie Verdell! He is just precious! Did you know that there were about 6 Verdells used in the movie?! Course our Hanzie and Bella are the cutest! Everyone says that about their own kids though, right?! :)

Ok, this is just a short note so that I could post my kiddos Halloween photo! Hanz and Bella make me so happy! We adore them and they are such a wonderful distraction from my stupid avm stuff! As always, I'll keep you posted on my progress! Thanks for all your love, prayer and support!

Cyndi

By the way, kuddos to my husband Mark that takes such wonderful care of us! From picking up the slack on chores I normally do but don't feel up for, to always cooking our dinner, changing out my trache (tonight), picking up prescriptions, bathing and cutting Hanz and Bella's hair, clipping their nails and taking them for a walk; as well as humoring me by taking them to Petsmart on weekends to "socialize" or visit other Brussels or whatever comes to my mind! Mark is an awesome husband and best friend!

Oh! Adding some photos! Here are Hanz and Bella when we took them to St. Pius X to be blessed on the Feast of St. Francis! Also, see Taco Dog - the chihuahua @ Petsmart! Another photo is on Hanz and Bella's birthday, we had a bubble machine going! Course some photos of Hanz and Bella on their own! My babies!

Saturday, October 15, 2011

Hi Everyone! Well, we just got back from another trip to CO for me to have an embolization @ Swedish Medical Center! Mark accompanied me on this trip, and drove us to San Antonio Tuesday morning to catch our CO flight from there! Arrived about 2pm and decided to see if our buddy Michelle was working @ Teds Montana Grill! Michelle has become a dear friend since we've been going to CO for my treatments. She is a waitress @ Ted's and has an infectious laugh and is one of those people that would give you the shirt off her back to help! She always offers to buy our lunch and we always leave money on the table to cover our bill! Michelle asked us not to be "sneaky" this time, so we actually took her up on her offer for the first time! We each had a Bison burger w/fries and tea!

On to the hotel - checked in and found that the trache supply company I get my medical things from, had left an incomplete order for me! At night, I sleep w/a humidifier on my trache, and I've gotten into the habit of calling ahead and having that company in Denver deliver what I need to the hotel room, so I won't have to lugg my equipment from home through the airports! So I only had like 2 out of the 6 parts or so needed, so had to get all that straighted out! Luckily I was able to get everything needed before going to sleep! We had to wake up @ 4:00 a.m. to get to the hospital by 5 a.m. to register for my embolization!

As always, everyone is so nice @ Swedish! I've gotten to know the 2 ladies in Admitting and they always make me feel good! Lately I've just been so discouraged with this whole avm business! It's not like I can take a break from it either - left alone, the avm grows and then I would be having more spontaneous bleeding! Meanwhile, since my family would rather I go more often ( I used to go every 2 1/2 months or so between procedures, and now I go every 6 weeks!) I've run out of sick or vacation time! Yikes! It's easier this way in the long run though, because if I wait too long and the avm grows, then Dr. Yakes is trying to play "catch up" and ends up having to inject more alcohol to shut down those arteries and then my recovery period once I get home is too long! I missed 3 weeks of work a few procedures ago, and I really can't afford to do that!

We go on to the next step, getting prepped for surgery. First attempt @ getting IV on failed, but got it on the second try buy nurse Gene. See Kelly in photo as well! Almost time for anesthesiologist to come talk to me before procedure, when the Chaplain stopped by to offer prayer! Of course we took him up on it, when I started hacking to get some phlegm out (gross, I know). I could feel that I started bleeding from my mouth somewhere, and before I knew it, it was flowing! I was needing to spit because I was gagging on big blot clots! UGH! Dr. Yakes came over to talk to me before that little episode and I was telling him how I couldn't take much more of what I was going through with the avm! I told him how Kelly tells his patients that he has yet to lose a battle w/the avm! He gave me a big hug - see photo! Spoke to the anesthesiologist and went over a few concerns and next thing you know, we're heading to OR! As always, the nurses are super sweet and comforting. Soon as I move to the bed in OR, I'm out in a few minutes! Next thing you know, I'm waking up! I know I needed something for pain and to go to the bathroom, but other than that, I wasn't doing too bad. I was taken to my room shortly after that and not long after, Mark showed up! I guess since I had some bleeding inside my mouth, I woke up with some gauze in my mouth - eeek! After getting settled in, I was able to get up to go to the bathroom - had to lay flat awhile, due to the angiogram Dr. Yakes does so he can see where the avm is. I changed into one of my own nightgowns and out of the hospital gown. That always makes me feel a little better!

Had a nice surprise in finding out that our friend Saba would be the Tech. in charge for the evening! She is the one I named my Build a Bear for!

Mark spent the night in my room with me this time, so we enjoyed watching TV and reading! That evening, Dr. Yakes other P.A., Mandy come by to go over discharge papers. We always try to do that @ night, that way we can leave whatever time we are ready for in the morning!

Once we left the hospital, we pretty much had to go return the car rental and then head to the airport!

Had a nosebleed while we were on the plane. :( It's bad enough that I'm all swollen and uncomfortalble, claustrophobic, and the man sitting next to me is spilling into my seat! Could not wait to get off that plane in San Antonio! Arrived on time and decided to grab a bite to eat! Wanted to get something we don't normally have in Corpus, so we went to Pappasitos Mexican Food Restaurant! The rice was too spicy hot for me, so it was exchanged for a white rice w/cilatro that had a buttery taste! I really couldn't each much, so the pulled pork enchiladas came home w/me in a to go container!

Well, I was going to end this here, but thought I would fill you in on another "adventure" I just had! My plan was to go back into work today, but after the bleeding mishap I had yesterday, I need a little extra time! Mark had gotten dressed to go to Mass Sunday morning and I wasn't up for going out yet. The blisters I had on the left side of my face had drained and it just doesn't look good. Not sure what to do about it - if I cover it, the area will get too moist and bleed. Course if I leave it uncovered, I'm exposing that delicate area to the elements. Anyway, I made some toast and jam and had just taken a bite, when I could tell I started bleeding inside my mouth! I had to quickly put away what I was eating/drinking or Hanz and Bella would go after it and ran to the bathroom sink. I had to call Mark, luckily he answered his cell phone and told him I was bleeding! He rushed home and it took us a while to get that under control! UGH! I had gotten blood all over the front of my t-shirt and the counter on the sink while trying to stuff gauze inside my mouth!

I am currently waiting for my primary care physician to open so I can go in and get a blood count - may need a transfusion again. Stop the insanity! This whole thing can just be ridiculous @ times. I've had a lot of drainage from my left ear, eye and wound on face. Between trips to CO, I have to "maintain" avm area to the best of my ability. Well, gotta go, as I am falling asleep due to meds! Will be in touch! Thanks for all your love, prayer and support! While we were gone, our dear friend Terry Schneider had a Mass for our healing intention @ St. Paul's in Flour Bluff! She has been such a prayer warrior for our cause!

Cyndi

P.S. I just got scheduled for a blood transfusion tomorrow @ 10:00 a.m. and should last about 4 hours! Mom will be picking me up and taking me over to the Cancer Center across from Spohn Hospital. I have been so blessed that my family has come together to support us completely with this entire situation. Both Celia and Mom were with me for my appt. w/Dr. Boynton this morning, as I got some blood work and a follow up after the embolization I just had in CO! I really appreciate the fact that they stop whatever they are doing, or fit my appts. into their busy schedule to make sure that I'm ok and able to get whatever I need done!